hi we have just found out our son has both genes to hemochromatosis I found i have 1 And Husband found he has the opistie gene so our son copped the double wammy he is 14 what does this mean for him in the future we know we have to get his iron studies done every 6 months, my husband and I had high range iron and will need to keep getting cheaked My brother is really bad with hemochromatosis as he found out to late im scared for my sons future thanks in advance
Your son is fortunate to find out early but, he probably won't overload for awhile. All he has to do is get appropriate phlebotomies and avoid alcohol and he should be able to protect his liver and other organs. I'm glad he was checked. None of my brothers or sister will have their iron checked which is so sad to me.
Salut Rachel...
Bien sûr, ce n'est pas agréable de savoir que votre fils a hérité de l'hémochromatose... MAIS... il va vivre une vie normale. C'est une excellente nouvelle que vous le sachiez maintenant.... en fin de compte, vous serez si heureuse d'avoir découvert cela maintenant. Tout ce que vous devez faire maintenant, c'est surveiller son taux de ferritine, et il doit être maintenu à environ 50. Pour le maintenir à un niveau sûr, il devra être donneur de sang et y aller peut-être 2 à 4 fois par an pour le reste de sa vie... peut-être même moins que cela. Ce sont les bonnes nouvelles... en tant que donneur, il peut sauver des vies, tout en se maintenant en bonne santé.
Peut-être ne lui faites pas manger autant de viande rouge.... assurez-vous qu'il boive beaucoup de lait et de thé en mangeant, car ces deux choses empêchent l'absorption du fer... surtout le lait et le calcium. Mangez beaucoup d'œufs avec les repas... cela arrête l'absorption du fer. Ne supprimez pas vraiment les aliments... prenez simplement du lait, des œufs et du thé avec votre nourriture.
Surveillez sa ferritine, et faites des traitements par phlébotomie de temps en temps.... et c'est tout... il vivra une vie ordinaire et saine. Mon taux de ferritine était de 2000.... heureusement, je n'avais pas de lésions d'organes, mais j'ai des lésions articulaires dans les mains. On m'a prélevé du sang chaque semaine pendant un an pour faire baisser mon taux de ferritine en dessous de 50. C'est le cas maintenant. Maintenant, je suis donneur de sang.... je vais environ une fois toutes les 6 à 8 semaines en ce moment... mais je pourrais y aller moins souvent avec le temps. Je vis maintenant une vie normale avec ces conseils alimentaires... je bois aussi un peu de bière et de vin le week-end... donc je n'ai même pas tout coupé car je n'ai pas de lésions hépatiques. Je m'entraîne également pour un semi-marathon en ce moment. Donc, tout va bien. Vous n'avez pas à vous inquiéter. Si vous êtes au Royaume-Uni, téléphonez et rejoignez la Haemochromatosis Society.... ils sont brillants et très solidaires et utiles. Je cours le marathon pour collecter des fonds pour eux. Restez en contact... tout ira bien. Mike.
I have both genes too - Only son but it looks like my dad carried both as Mum as been tested and shes fine - Think if you catch it in time and maintain it then its fine and also watch what triggers a fluctuation in iron levels - Mine seems to be Vitamin C particuarly fresh orange
It is good that he has found out so early. He is only 14 and still growing so don't reduce his red meat and iron intake from food, or else he won't grow up big and strong. Just avoid foods that have iron supplementation, e.g. bread, cereals.
You don't say what his ferritin iron level is and I don't expect him to loading iron yet. My son is also compound heterozygous C282Y/H63D, however both of his parents are homozygous C282Y and homozygous H63D so he could not miss out. At 22, his ferritin iron was 772, and he was tall and slim. He started with weekly venesections. Once he moved out of home, as young men generally do, he got slack about it and that has caused issues with his health. Keep your son well informed and educated on these issues with the hope that he does not go astray later on.
When you son is old enough (18?), get him in the habit of donating blood every 3 months, and don't mention the H word. The blood is definitely not harmful, just that Blood Bank is sensitive about it and will make him jump through some hoops. Just go as an ordinary volunteer donor. All of you can do that also. Make it a family thing.
There are dietary things he can do once he starts loading iron, e.g. drink tea/coffee/milk with meals. These help reduce the uptake of iron. Never OJ or other high vit C drinks, vit C tablets with meals and these increase the uptake of iron. Any foods with calcium in it help reduce the uptake of iron, e.g. dairy, yoghurt, cheese. Have these as desert with meals, instead of sugar and starches, as the last two also increase the uptake of iron into the liver, causing fatty liver.
I am glad he is not one of the many who find out too late, once damage has been done to their health.
Best wishes
ty so much for your replys yes we already know mention the h word to blood banks and they go nuts crazy its high iron blood would have though tha was a good thing lol but yes ty guys for all your advice bee n a great suport he will is devistated he can teat to many oranges as its his favorite fruit
It is ok to eat an orange as a WHOLE FRUIT just not 6 juiced at one time. You could search for "The Hemochromatosis Cookbook" by Cheryl Garrison at your local library or ask them to get a copy in for you. Not necessarily for the recipes, but all the information about food and why you can eat it. That way, you can avoid the myths.